NAPA TOWN HALL GEORGIA INPUT SESSION
SUMMARY
NAPA Session—Statewide Information on Those Attending
255 registered
187 attended
25 Chapter staff attended
Congressional Staff:
 Representing Senator Saxby Chambliss—Jim Hussey, Senior Field Representative
 Representing Senator Johnny Isakson—Nancy Bobbitt, Senior Field Representative
 Representing Congressman John Barrow—Najhee Jackson, Staff Assistant
 Representing Congressman Sanford Bishop—Kenneth Cutts, District Director
 Representing Congressman Paul Broun—Caitlin Burns, Caseworks and Grants Staff Person
State Legislators: 2
City Council: 2
State Agency Attendees:
 GA State Long-Term Care Ombudsman
 Atlanta Area Agency on Aging Staff Member
Health Care Providers: 6
Media: 2
NOTE: Every comment that was provided—verbal and written—was compiled and the entire list of
comments along with the name of the person making the comment and the in which they lived was
provided to our National Public Policy Office, along with this summary of comments. They will compile
all comments from across the country into a document to be provided to the United States Department
of Health and Human Services.
DETECTION AND DIAGNOSIS
 Include MCI as formal diagnosis.
 #’s of undiagnosed and under diagnosed is significant
 Physician agrees with new neuropathological criteria for post mortem diagnosis using biomarkers
and new technology.
 Priority needs to be placed on early detection—so people—PWD and caregivers can get what they
need to be able to face what lies ahead.
 Alzheimer’s is not treated with the urgency of care that other disease are—those living with the
disease are still living—treat them with dignity/respect and give them resources, drug therapies and
hope.
 Alzheimer’s disease does not have the emphasis and urgency with physicians that those diseases
with a cure have—change this—make treatment urgent.
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Ensure that NAPA includes detection and diagnosis not just on Alzheimer’s, but all other dementias
as well—differentiating between the forms of dementia. Efforts need to be coordinated—this
cannot wait, we are at a tipping point now—ACT NOW!
Misdiagnoses occur because of dual diagnosis—psychological problems and AD—ACCURATE
DIAGNOSIS IS CRUCIAL!
Concern about how physicians discuss diagnosis with patient and family—don’t rush through it and
hurry out the door—take time to counsel, provide resources and other connections to assistance in
the community.
Give an accurate diagnosis—don’t just label all dementias “Alzheimer’s” for convenience or
whatever other reason.
More research needed to lead to earlier detection—biomarkers—federal –led programs to educate
public.
Ensure Person with Dementia and Caregiver Consultation at time of diagnosis—crucial step in
patient-centered care and care coordination especially if there are dual or multiple diagnoses.
Educate all levels of care providers within the healthcare community on the differences between the
dementias—and teach them not to lump everything into a single diagnosis of “Alzheimer’s.”
Focus on the language that we use—do not forget that they are human beings—focus on care of the
HUMAN PERSON, NOT THE PATIENT!
Unique Comment: “It is very tough as an old Army veteran that went through Viet Nam and got
wounded in 66-67. I have been to hell and back but right now I am still in hell with this problem with my
wife now.”
TREATMENTS AND THERAPIES
 How can you develop drugs to slow progression, arrest progression, or cure the disease if you don’t
invest in finding the cause and the medications to slow/arrest/cure?
 Cost of drugs is barrier to access to treatment—bring down the costs!
 Besides the emphasis on research/study to find the cause, prevention, and effective treatment—
there needs to be consideration given to what we do now.
 Develop a marker for Alzheimer’s through research and development.
 Research is the main focus of the solution for the problem to implement primary preventive
measures.
 We must make a significant commitment to research now.
 Lower the age to access and enter a clinical trial.
 Conduct research in long-term care facilities.
 We need more research into younger-onset—it tends to progress more rapidly.
 Costs are too high—medication costs, families’ providing care at home costs, and long term care
costs—find a way to help offset these costs.
 Available treatments don’t slow the disease—at best, they may help with behaviors—we need
treatments to slow the progress or arrest the progression—or, better yet, to cure it.
Unique Comment: “We know there are many budget concerns in Washington. We have raised $9.2
million towards research so far. We want the money that we raise to go to the important issues that
you have discussed in this Town Hall…I cannot say how I feel about all of the heartbreaking stories that
we hear and budget restraints should not hold us back in trying to find a cure for this disease…”
HEALTHCARE
 The health care industry does not know how to treat vascular dementia.
 Healthcare workers need training in dementia—especially behaviors.
 Physicians are not aware of resources—require that they become aware of what is available in their
communities. Place Association and other resources and publications in all family practitioners’,
geriatric, neurological, and psychiatric offices…and require them to stock them and give them to
families at time of diagnosis.
 There needs to be better portability of benefits for persons with Alzheimer’s who must relocate to
be near family.
 Access to transportation is a major barrier to access to healthcare—especially for those with
dementia/Alzheimer’s because as the disease progresses, they must stop driving—and often, they
may be the only spouse who drives. This is especially true in rural areas.
 DO NOT CUT ANY MORE FUNDS for memory loss/Alzheimer’s Care.
Unique Comments:
 “Those diagnosed with younger onset Alzheimer’s do not need to have to wait to become eligible
for affordable insurance and prescription drugs.”
 “We have a current and worsening shortage of primary care physicians—particularly physicians
trained and knowledgeable in the care of patients with dementia—and willing to see these patients.
We need incentives/requirements in physician education so that training in geriatrics is included.
Coupled with this, we need adjustment of the Medicare payment system to physicians so that
consideration and payment given for the time involved in the care of the patients.”
CAREGIVER SUPPORT:
 Key issue of virtually every speaker was availability of respite and respite dollars—and that this
needs to be strongly addressed in the National Plan.
 Another key issue of about half of the speakers was: There MUST be more support groups for
younger onset.
 This is NOT JUST A DISEASE OF THE PERSON, BUT ALSO OF THE FAMILIES.
 Provide funding to help caregiver pay for cost of medication, diapers, Boost, etc.
 I am very grateful that the Alzheimer’s Association offers support groups.
 There needs to be more funds for respite programs and family caregiver training.
 Caregiver stress and health issues are key issues—respite care is crucial to keeping the caregiver
able to continue to provide care.
 Caregiver burnout identification and preventative measures need to be funded and addressed
quickly.
 For the person with dementia, having to rely on the caregiver for help and worrying about the toll
that the care being given to the PWD is placing on the caregiver increases stress for the person with
dementia at a time when he/she is already anxious enough. Will my caregiver get the care she
needs to be able to continue to care for me? If not, what will happen to me and to her?
 There needs to be better portability of benefits for persons with Alzheimer’s who must relocate to
be near family to help care for them.
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There needs to be required training for all practicing attorneys who advise individuals about wills
and trusts, and who assist individuals in applying for or appealing when denied Social Security
Benefits. They need to be required to have training on the Compassionate Allowances. (This was a
frequent comment.)
Unique Comment: “I took a pay cut and detoured my career to the side of the road to move here to
help care for my mother. As a result, my own ability to retire is questionable, and if I get dementia, I will
be a burden on the system—I would not have anyone to care for me. Fund access to adult day services
for people who don’t qualify for programs like the Medicaid Waiver. This will provide respite care for
caregivers and put off need for more expensive placement; enhance quality of life and functioning for
the dementia patient; enable caregivers to remain in the workforce so they will have the resources they
will need in their later years.”
CARE COORDINATION:
 A recurring theme was more education for physicians and other health care providers about all of
the dementias and Alzheimer’s—this was heard from about half of the spoken or written
comments.
 Formalize a mechanism for care management and consultation to be available to caregivers and
patients from the time of diagnosis. Care management can reduce overall costs—both financial and
non-financial.
 Frequently, caregivers are so overwhelmed when their family member is given the Alzheimer’s
diagnosis that even when they have access to resources from various sources, they cannot keep
them straight. Care coordination by the physician to assist caregivers is crucial—physicians and
other medical personnel must communicate with each other using the same terms, and referring to
non-medical sources of assistance as well.
 When physicians prescribe antipsychotics, consent is not sought from the families…EDUCATE
PHYSICIANS ON THOSE ANTIPSYCHOTICS THAT ARE CONTRA-INDICATED FOR THOSE WITH
ALZHEIMER’S AND OTHER DEMENTIAS.
 Hospital personnel—especially ER staff—MUST be trained on Alzheimer’s—especially behaviors,
restraints, and medications and side effects—especially of anti-psychotics.
 Physicians and other care providers need to be taught to think of individuals with Alzheimer’s or
other dementias first as persons—worthy of dignity and respect—and give them the same dignity
and respect they’d expect for themselves.
 Physicians and all medical care personnel need more training on younger onset as well as older
onset—and the resources available to those families. Imagine a parent in their 80’shaving to care
for a child with Alzheimer’s in her early fifties.
 The health care industry must be trained on the various types of dementia, with dual diagnoses, and
how each person with dementia is unique in their presentation of symptoms and in their
progression with the disease.
 Healthcare workers MUST be trained in dementia—especially behaviors and progression.
Unique Comment: “In June of this year my brother and I went down to Florida to care for my parents
who have been married for 50 years and we went down because my father’s health has been declining
and what we found was both of them in such poor health that we had to separate them put one in a
nursing home/rehab facility and the other in assisted living and my mother was subsequently evaluated
for her memory having the same issues you are describing here and was determined by a psychiatrist to
have mild cognitive impairment. So she is in assisted living facility right now. He did not want to render
a diagnosis of Alzheimer’s because according to him you have to be deceased and have an autopsy of
the brain to get the diagnosis. Because my husband is a psychiatrist we went ahead and asked for
Aricept and they gave a wishy washy that they didn’t know about that so we had to be very assertive. I
am blessed that I am in the medical field as a dietician and that my husband is a psychiatrist to know my
way through and to navigate and to say this isn’t right or that isn’t right and you need to be doing this or
you need to do that. So I am standing her advocating today that we do educate the facilities more, the
physicians that we educate the nurses because after we had her placed in assisted living I returned to
Augusta and four weeks later when we returned we found out that they had turned over to my mother
insulin vials and syringes, she’s a type 1 diabetic and they were letting her manage her diabetes by
herself. So her purse is now full of vials and syringes she’s willy nilly all over taking injections, still
driving, and just has no way of knowing where she is on the map with blood sugars so of course she is
bottoming out. When we brought this to their attention they told us this can’t possibly be happening in
their facility because it is a federal law and that would be in violation of the federal law which it is a
federal law and they were in violation of the federal law because the nursing staff said she presented so
wonderfully that they trusted that she could do this and they did not want to take away her freedom
and her ability and so they just handed this over to her and let her manage it all the while we are paying
and having the security that they are doing that. So there is a lack of education out there and there is a
lack of, I am not sure if the right word is competence but facilities that address specifically this issue.
There needs to be more training to the staff because maybe their heart was in the right place but their
mind way not. So I support all the training.”
CARE OPTIONS:
 Staffing ratios in all settings is an issue—trained staff, not just counting untrained gardeners and
maintenance men in the ratio—although they should be trained, too. This is something we heard
again and again throughout the input.
 One of the key consistent comments from most speakers was: There needs to be standardized
qualitative dementia care training across the entire continuum of care for anyone treating or caring
for a person with Alzheimer’s or a related dementia. This needs to be standardized across the
country to ensure that the quality of care is consistent from one state to another.
 Consistently from a large majority of our speakers or in written comments, we heard again and
again that personnel in adult day programs, personal care homes, assisted living facilities, and
nursing homes need to be required to have many hours of dementia training—on all the types of
dementia including Alzheimer’s. Make this a federal requirement.
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There needs to be a single national Silver Alert or Mattie’s that requires states to coordinate with
each other when a person with dementia wanders and is driving, and that requires each state to
train law enforcement, 911, and other emergency responders on dementia and the alert. The alert
needs to be given as much emphasis as the Amber Alert—aren’t our seniors just as important as our
youth!
Person-centered care in the appropriate, least-restrictive environment is critical. There needs to be
developed a national standard for this care.
Unless you’ve been a caregiver of someone you love, you don’t realize the burden that it places on
the family. Though it is typically a burden that the family willingly carry out of love for their family
member, they need help, support, resources, a circle of care for them—and they need to know that
state and federal agencies, the faith community, and others stand with them to ensure that their
family member’s needs as a person with dementia and their needs as a caregiver are a priority in the
healthcare industry.
Unique Comment: “My husband Gene is in the late middle stage. I have two things I would like NAPA
to include. One is to build more Alzheimer’s specific facilities dedicated to the treatment of Alzheimer’s
patients. It has been our experience to see assisted living and nursing homes that take general
population and places Alzheimer’s patients in there and it is just not a good fit. The other thing is to
have education and more awareness for the medical staff themselves. I am speaking AL and NH staff
and personnel in home health care. My husband was in three facilities in six months the first two lacked
an understanding in the treatment and behavior of AD patient especially the aides who are the main
caregivers. He is now in Caroll Campbell Center in Lexington SC. He is there simply because there are not
enough Alzheimer’s facilities in the Augusta area. And the better ones have long waiting lists.”
AWARENESS OF ALZHEIMER’S DISEASE:
 There needs to be a massive, nation-wide community education campaign to educate the public
about Alzheimer’s and the other forms of dementia—both younger and older onset: symptoms,
diagnosis, medications, research, care options, community resources and supports.
 Stigma of the disease is still very much alive and needs to be addressed immediately in the National
Plan.
 Most people don’t know what it is, or don’t pay attention to it, until someone in their family is
diagnosed—then they “get it.”
 Introduce Alzheimer’s classes in all high schools to help support those children and youth who are
also serving as a family caregiver.
GOVERNMENT SUPPORT:
 It is absolutely necessary to develop rural service delivery for those with Alzheimer’s—including
attendant care, access to diagnosis and care coordination, access to community supports such as
respite, and access to transportation to be able to access the needed care and support.
 Alzheimer’s care, support, funding is not treated with the same urgency as other diseases. Those
who provide assistance to caregivers need to understand this—health care providers, caregivers in
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facilities—all need to treat the disease, the care for the person with dementia, and the caregiver as
if they are just as important as someone who has a heart condition, HIV, or cancer.
Make more money available to assist those who choose to care for their family members at home,
rather than placing them in a personal care home, assisted living facility, or nursing home—money
should follow the person. The person should have the right to choose where home is for them—and
they should be provided that home in the least restrictive environment. This will also cut the cost of
institutional care, and provide loving caregivers.
Many doctors are no longer accepting Medicare—because of the low level of reimbursement—
this needs to change through the provision of incentives to accept Medicare by raising the
reimbursement rate and encouraging the packaging of services at a higher reimbursement rate.
The government needs to ensure that everyone—even those with a diagnosis of Alzheimer’s or
dementia who are forced to resign or who are fired because of the impact that the progression of
the disease has on their ability to work has coverage. Treat the Alzheimer’s and dementia diagnoses
while individuals are still working as AD issues and continue to work with the employee until he can
no longer function at all at any job available through his employer—then use that ADA unemployability as a basis for a disability diagnosis and quicker access to Medicare.
The Medicare waiting period is too long—as people are forced to quit work, they lose income and
health benefits—and often have to sue to get the deserved benefits.
Eliminate the Medicare Two Year Wait Period for Younger Onset—the progression of the disease is
typically more rapid for these individuals who may have been the primary breadwinner for their
wife and children—and they could well need long-term care or die by the time they begin to receive
benefits.
Ensure that minimum standards/requirements for each component such as physician education,
facility standards/staff training, etc., are set by the federal government, and then are translated
into regulations to be enforced consistently in the states—consistency of care from state to state
is important—especially when a person with Alzheimer’s is moved from one state to another.
Uniform Adult Guardianship Protective Procedures should also be consistent from state to state.
ADDITIONAL COMMENTS THAT SHOULD BE SHARED WITH THE DEPARTMENT OF HEALTH AND
HUMAN SERVICES:
 With NAPA, ensure that when the annual update occurs and there are things that did not happen to
meet that year’s objectives (the year which is being reported), the Council should explain why and
what they are going to do to ensure that it is completed in the upcoming year’s objectives as a part
of the report.
 Ensure that the entire annual report is available to the public in its entirety, as well as either an
executive summary or a synopsis.
 Access to services across the spectrum of care must be developed—including access to care at
home.
 Transportation to those services, especially in rural areas, is a barrier.
 Ensure that the National Plan includes strong policies supporting those with younger onset—
throughout the spectrum of care. Ensure there is an age-appropriate place for them and that they
don’t have to be in an environment designed for those in their 80’s if they are only in their 40’s or
50’s.
 Ensure that consideration is given to live-alones and the development of a strong support system
for them. If they don’t have family to care for them, find a way to encourage communities and
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state and local agencies to develop caring circles or innovative programs to provide care and
support.
Incentivize best practices and then replicate them across the country.
Unique Comments:
 “The Advisory Council should have a representative of long term care residents in a facility as well as
the long term care program. Add training long term requirements for staff, research projects for
those in facilities. Becky Kelly, the National Director of Ombudsmen in Washington, DC, would be a
great choice.
 “Alzheimer’s is the only disease that takes your loved one twice.”